Hello, Sorry to read about your Dad and that he has come off Thelidomide, due to the side effects.  The CDT treatment has proven to work very well, and yes you get the nasty side effects with these toxic drugs. When I was on CDT the Thelidomide dose was 100mg which I took late at night with Horlicks and a biscuit. I did get neuropathy in the…[Read more]

Hi Graeme,   I had my SCT in March this year in Kings College Hospital London, for me it was tough however managed to get through it, Like the posts say ice lollies and yogurts for the throat and sleep don’t worry about how much. There were a number of blood transfusions and Platlets transfusions even after being discharged from hospital. I think…[Read more]

Hello, my name is Chris also and was diagnosed with MM June 2014, by that time it had servealy damage lots of bones. My legs and spine in particular,  I decided to go for the standard treatment which was CDT tablet form, so that was the chemo, steroids, and Thelidomide, my kappa light chain reduced to 64 from 1250. I then had a stem cell…[Read more]

Hi Brian, first good luck with the SCT, I hope it all goes through soon and with no complications. I had my SCT in March and slowly reducing the various Meds that I was on once my blood levels stablelised the last tablets I am on is Aciclovir which the Consultant said would be on it for 6 months. I get my post 100 days result next week so at this…[Read more]

Hello Susie, I do have bone pain after a Zometa infusion especially my femur leg bones and back I do suffer this pain as a matter of course but it certainly seems worse after the infusion. I normally have to take extra pain relief for this period of 3 to 4 days then it settles. I have mentioned it to the nurses who give it to me and they say the…[Read more]

Hi Mavis, sorry for not getting back sooner, Re: OxyContin I am not too sure about the sleepy  but probably yes. I am only 3 month post SCT and have been sleeping so much, prior to the transplant the tablet is a 12 hour slow release. I take it at 8am & 8pm so with the evening one I am already in bed due to pain & fatigue therefore if I sleep is…[Read more]

Hello,

Thats strange because I also had SCT in March and although I already had lots of bone damage therefore have painful legs & back. I have noticed that my shoulder is really painful, and my lower legs painful when I first get out of bed in the morning. The other strange thing that happens is when I have a wee my lower legs feel like they are…[Read more]

Hi Mavis,

Sorry to read about your bone pain and fully understand what is like having bad bone damage myself. Before I was diagnosed I was eventually put on Tramadol which I was taking in large amounts however once diagnosed because I was on the maximum amount of Tramadol they put me on OxyContin which I am still on. I think it is Morphine based…[Read more]

Hello Michele,  Thank you for the information ,  yes have been keeping myself very much in isolation, my appetite is slowly getting back along with the taste buds.  I just hope that my Neutraphil level start to rise, they have given me some more injections to promote this, but I really wanted them to come back on their own accord. The diet su…[Read more]

Hi  Eva

i fully understand the worry and frustration you must be going through, and I am sorry I cannot allay those for you. I can give just a personal account of the very little I know regarding blood test and diagnosis of Myeloma.

After hospitalization,

I had no Paraprotien level indicated, but my Serum free kappa light chain reading was…[Read more]

Hi  Eva

i fully understand the worry and frustration you must be going through, and I am sorry I cannot allay those for you. I can give just a personal account of the very little I know regarding blood test and diagnosis of Myeloma.

After hospitalization,

I had no Paraprotien level indicated, but my Serum free kappa light chain reading was…[Read more]

Hi  Ava,

i fully understand the worry and frustration you must be going through, and I am sorry I cannot allay those for you. I can give just a personal account of the very little I know regarding blood test and diagnosis of Myeloma.

After hospitalization,

I had no Paraprotien level indicated, but my Serum free kappa light chain reading was…[Read more]

Hi, Sorry to read about your husband and fully understand how you both must feel also how life can change so quickly.

I did not have that reading of kappa light chain figure mine was approx 1200,  the reason why I thought to reply is that most people quote Para protein levels and rarely kappa light. I am no expert in any respect of this but my…[Read more]

Hi Julie, read your post and wish you all the best with the SCT,  I hope to do the same in the near future,  when i was diagnosed with MM back in June I chose the standard treatment not sure why I think I was still in shock at that time and had little time to make my mind up. Anyway I am on my 7th cycle of CDT and my kappa light chain has reduce f…[Read more]

Hi Julie, read your post and wish you all the with the SCT,  I hope to do the same in the near future,  when i was diagnosed with MM back in June I chose the standard treatment not sure why I think I was still in shock at that time and had little time to make my mind up. Anyway I am on my 7th cycle of CDT and my kappa light chain has reduce from 1…[Read more]

Hello John,

Glad to read you had the infusion all ok I hope that it works well, I had my zometa the other week the day after CDT and after 2 days had terrible shakes but it wore off.  And yes I also hope that it will help repair the bone damage, once a month for 2 years.  I took my CDT this morning 09:00 with breakfast, plus a glass of milk to h…[Read more]

Hi Mavis,  Thanks for the message.

I agree with what you have written albeit I have not got one yet but I  certainly will do so, it can be parked in the garage ready to use at anytime.

Regards Chris.

Hello Stanley , Many thanks for your message, I really appreciate the encouragement from everyone and the tell tale signs of the side effects. A nice cup of Horlicks just before I take the Thalidomide tablets seem to help, well what I mean is that’s my little treat with a biscuit then it’s sleep time ha ha. I don’t have any blood test results…[Read more]

Hi John,  Good luck with the treatment I hope that the infusion indeed helps with walking, my legs are really painful at the moment not sure if it’s the CDT or what. Thinking about buying a mobility scooter just to get down the shops and around. Crying I do a lot of that, not too ashamed to say, for all sorts of things. I think the Dex sometimes…[Read more]